The document summarizes challenges and opportunities for developing a cancer survivorship research agenda. It notes that the aging population will lead to a large increase in cancer cases and survivors in coming decades. Cancer survivors often face significant physical and mental health issues. More research is needed to understand late effects of treatments and better deliver palliative care, prevention, and health promotion to survivors. Opportunities exist to form interdisciplinary teams, study symptoms and comorbidities, develop safer therapies, and test new models of survivor care. Where to start depends on available populations and expertise. Translational research integrating population health and scientific discovery is key.

1. DEVELOPING A CANCER SURVIVORSHIP
RESEARCH AGENDA:
CHALLENGES & OPPORTUNITIES
Patricia A. Ganz, MD
UCLA Schools of Medicine & Public Health
Jonsson Comprehensive Cancer Center
Survivorship Research Day
Dublin, September 19, 2013

2. “Three More Months” by
Sharon Gough RN and Paul Roseingrave CCA
Treatments are over, healing established.
Physically easy, mentally challenging.
A fresh beginning; a new normal begins.
Unusual aches and pains…same worries and concerns.
Blood work and scans along with doctor appointments.
Life continues with no evidence of disease.
Goal achieved for another three months.
Oncology Times, Poetry by Cancer Caregivers, July 25, 2013; authors
are also cancer survivors

3. Overview
 The changing face of cancer: the
challenge of an aging population
 Limited resources for delivery of health
care; increased fragmentation of care—
how do we respond?
 What are the research opportunities?
 Where to start?

4. Pal & Hurria, JCO, 2010----US data
Aging & the Cancer Epidemic

5.  From 2010-30, total cancer
incidence will increase from 1.6 to
2.3 million
 Increase is driven by the aging of
the population (67% increase from
older adults vs. 11% in younger
adults)
 A 99% increase is anticipated for
minorities, compared with 33% for
whites
 Percentage of all cancers
diagnosed in minorities will
increase from 21% to 28%
Smith et al, JCO, 2009

6. Who are the Cancer Survivors?
 More than 1 in 3 Americans will be diagnosed with
cancer in their lifetime
 Almost 14 million Americans have a personal
history of cancer; 4% of US population
 More than 25 million people are survivors world
wide
 The number of cancer survivors will increase
sharply during the next 25 yrs with aging of the
population

7. 18 Million U.S. Cancer Survivors Projected in 2022

8. U.S. Cancer Survivor Facts
 60% of survivors are currently over the age 65
years.
 Breast, Prostate, and Colorectal, are the 3 most
prevalent cancer sites.
 Approximately 14% of the 13.7 million estimated
cancer survivors were diagnosed over 20 years ago.
 The current average age of male and female cancer
survivors is 69 and 64 respectively.

9. Trends in Five-year Relative Cancer Survival Rates (%), 1975-2008

10. Irish Cancer Statistics- courtesy A. O’Connor
 30,000 new cases every year, with >40,000
expected in 2020
 1in 3 men and 1 in 4 women (U.S. 1 in 2 men, 1 in 3
women)
 5 yr cancer survival: 60% of men, 62% of women
 280,000 people diagnosed between 1995-2009
have survived their cancer

11.  Comparison of cancer survivors and age-matched
individuals from the National Health Interview
Survey (NHIS) in 2000
 Multiple measures of burden embedded within the
survey
JNCI 96:1322, 2004

12. Health Status is Significantly Poorer in
Cancer Survivors
Excellent
Very
Good
Good
Fair
Poor
Excellent
Very
Good
Good
Fair
Poor
Yabroff, JNCI 2004
Cancer Survivors (N=1817) Noncancer Controls (N=5465)
P <.001
18% Fair & Poor
31% Fair & Poor

13. Number of Comorbid Conditions
Burden of Illness is Greater
0
10
20
30
40
50
60
0 1 2 >= 3
Ca Surv
Noncancer
P<.001
%
Yabroff et al. JNCI 2004

14. Cancer
survivors
N=1817
Noncancer
controls
N=5465
Needs help with
instrumental ADLs
11.4% 6.5%
P <.001
Any limitation in any
way
36.2% 23.8%
P <.001
Needs help with ADLs 4.9% 3.0%
P=.003
Yabroff et al. JNCI 2004
Cancer Survivors Need More Help with
Activities of Daily Living (ADLs)

15. Comorbid Conditions Causing
Limitation in Cancer Survivors
Condition causing limitation, % CA Survivor Control P-value
Arthritis/rheumatism 21.9 18.4 .005
Back/neck problem 12.0 9.5 .01
Fracture/bone/joint injury 7.0 5.3 .03
Heart problem 5.8 4.8 .17
Stroke 2.1 1.8 .50
Hypertension 3.6 2.6 .02
Diabetes 2.6 2.3 .57
Lung/breath problem 4.8 3.6 .03
Depression/anxiety/emotional problem 2.5 1.9 .21
Weight problem 1.9 1.5 .34
Musculoskeletal problem 4.3 3.5 .18
Yabroff et al. JNCI 2004

16. Examining the Interaction of Age,
Comorbidity, and Cancer
What is the impact of comorbid conditions
on survival after cancer?

17. Cancer will soon be the Leading Cause of
Death in the U.S.

18. Mean Age by Phase of Care for
Cancer and Comorbid Conditions
Yabroff, Med Care, 2007 using NHIS Data

20. R. Yancik, et al. JAMA, 2001

21. R. Yancik, et al. JAMA, 2001
Comorbid Conditions & Breast Ca

22. R. Yancik, et al. JAMA, 2001
HTN
Heart disease

23. R. Yancik, et al. JAMA, 2001
About half of all deaths are due to causes other
than breast cancer!

24. Survivorship research….
 A requirement for development of treatments to
improve quality of life for cancer survivors
 Necessary for prevention of late effects, through
understanding of biological mechanisms and
modification of cancer treatments
 Need to attend to comorbid conditions as well

25. Opportunities…
 Need for translational teams of researchers—move
the observations from the clinic and population back
to the lab—to understand biological mechanisms
 Focus on primary, secondary and tertiary
prevention of long-term and late effects
 Assume each patient you treat will be a
survivor—treat for cure AND treat for
long-term survivorship!

26. Diagnosis and
Staging
Palliative
Treatment
Treatment With
Intent to Cure
Cancer-Free
Survival
Managed
Chronic or
Intermittent
Disease
Recurrence/
Second Cancer
Cancer Care Trajectory
Death
Treatment Failure
Start Here
IOM, 2005
Survivorship
Research &
Survivorship Care

27. Why is cancer different from other chronic
diseases?
 Cancer treatment is….
 Complex
 Multi-modal
 Multi-disciplinary
 Toxic
 Expensive
 And often poorly coordinated
 Cancer treatment usually occurs in isolation
from primary health care delivery

28. Other Challenges
 Limited systematic study of the late effects of
cancer therapy
 Follow-up care plans have been ad hoc, with focus
on surveillance for recurrence
 When should health promotion and chronic disease
prevention become the focus?
 Infertility? “Dear, you should just be happy to be
alive.”

29. Survivorship Health Care Delivery:
A need for systematic research
 The Three P’s of Survivor Care
Palliation
Prevention
Health Promotion
Ganz, P A. (2011). The 'three Ps' of cancer survivorship
care. BMC medicine, 9, 14-14.

30. Symptom Management/Palliative Care:
An Integral Part of Survivorship Care
 Definition of Palliative Care:
 Medical care or treatment that concentrates on
reducing the severity of disease symptoms (particularly
if there is not a curative medical treatment)
 Goal is to prevent and relieve suffering and to improve
QOL for people facing complex illness
 Focus on the most severe and prolonged symptoms

31. Common Palliative Care Concerns
 Pain
 Fatigue
 Depression
 Physical limitations
 Cognitive changes
 Lymphedema
 Sexual dysfunction
 Menopause related symptoms
 Body Image

32. Why is it important to understand
biological mechanisms of symptoms?
 Identification of underlying biology provides
support/validity for complaints
 Leads to possible interventions (pharmacological or
behavioral)
 Potential for prevention, if at-risk individuals
identified
 Possible relationship to tumor biology and progression

33. Antoni et al. Nature Reviews Cancer 6, 240–248 (March 2006) | doi:10.1038/nrc1820
A Biobehavioral Model of Cancer

34. Prevention
 Systematic ongoing follow-up required for screening
 Goal: early detection and early intervention for
potentially serious late-onset complications e.g.,
cataracts, osteoporosis, cardiac disease
 Chemoprevention when available
 Life style modification to prevent second cancers

35. Health Promotion
 Health promotion counseling
 Goal: promote risk reduction for health problems that
commonly present during adulthood ( esp. for childhood
cancer survivors)
 Avoid weight gain
 Increase physical activity
 Avoidance of exposures that are harmful
 Decrease risk of other chronic diseases, e.g. diabetes,
heart disease

36. How to deliver the 3 P’s?
 New research is needed on models of care delivery
 One size will not fit all; different settings and
different patients will have different requirements
 What is right for Ireland may not be right in other
settings

37. Diagnosis and
Staging
Palliative
Treatment
Treatment With
Intent to Cure
Cancer-Free
Survival
Managed
Chronic or
Intermittent
Disease
Recurrence/
Second Cancer
Research Focused on the Late Effects of Cancer Treatment
Death
Treatment Failure
Descriptive studies;
what happens after
cancer treatments
Start Here
IOM, 2005

38. Diagnosis and
Staging
Treatment With
Intent to Cure
Cancer-Free
Survival
Infertility
Cancer Care Trajectory
Start Here

39. Diagnosis and
Staging
Treatment With
Intent to Cure
Cancer-Free
Survival
Infertility
Cancer Care Trajectory
Start Here
Fertility preservation

40. Diagnosis and
Staging
Treatment With
Intent to Cure
Cancer-Free
Survival
Infertility
Cancer Care Trajectory
Start Here
Fertility preservation
Treatment change

41. Diagnosis and
Staging
Treatment With
Intent to Cure
Cancer-Free
Survival
Infertility
Cancer Care Trajectory
Start Here
Fertility preservation
Treatment change Infertility “Treatment”

42. Diagnosis and
Staging
Treatment With
Intent to Cure
Cancer-Free
Survival
Managed
Chronic or
Intermittent
Disease
Recurrence/
Second Cancer
Cancer Care Trajectory
Start Here
Risk assessment and intervention at diagnosis
Safer or more targeted
therapies

43. Diagnosis and
Staging
Treatment With
Intent to Cure
Cancer-Free
Survival
Medical Outcomes
and Quality of Life
Recurrence/
Second Cancer
Cancer Care Trajectory
Start Here
Risk assessment and intervention at diagnosis
Safer
therapies

44. Diagnosis and
Staging
Treatment With
Intent to Cure
Cancer-Free
Survival
Medical Outcomes
and Quality of Life
Recurrence/
Second Cancer
Cancer Care Trajectory
Start Here
Risk assessment and intervention at diagnosis
Safer therapies Survivor health care delivery:
Palliation, Prevention
and Health Promotion

45. Where to start?
 What populations do you have access to?
 What is the setting of care?
 What existing expertise can be applied
to the cancer survivorship research
agenda?

46. Potential Strategies
 Develop transdisciplinary teams focused on
common symptoms or chronic conditions
 Engage social and behavioral scientists
 Work closely with researchers who work with
the aging population
 Work with your health system and examine
new models of care delivery
 Study diseases other than breast cancer!!

47. T1
T2
T3T4
T0
Survivorship Research & The Translational Science Process
Modified from Khoury MJ et al; Am J Epidemiol 2010; 172:517-524
Population
Health; Disease
Burden; Public health
impact (Surveillance
indicators)
Scientific Discovery
(preclinical,
epidemiology
mechanism studies)
Evidence based
Recommendations
& policies
(Guidelines)
Tests of promising
Interventions
(Phase I, II, &
III trials)
Implementation into
Practice,
Organizations, &
Communities
Knowledge Integration
(Management, Synthesis and
Stakeholder Engagement)